It’s a crisp October afternoon, the kind of autumnal day I typically love. But I’m sitting in my doctor’s office, after a week of inexplicable, excruciating mouth pain. It feels like I’ve scorched my tongue on a hot drink, but I haven’t. My doctor ultimately diagnoses me with thrush.
This feels wrong to me. I’ve seen a lot of thrush, having worked with infants for years. My mouth looks completely normal. Still, I fill the antifungal he prescribes, and take it. The pain is endless. The medication isn’t helping. So I go into research mode.
A month passes, and I’m still miserable ― but I’m also armed with a theory, so I return to my doctor. I tell him that I think it’s burning mouth syndrome, or BMS, sometimes referred to as glossodynia. In the U.S., it’s estimated that less than 20,000 cases are diagnosed per year. There are two forms of the condition: primary, in which no underlying cause can be determined, and secondary, in which there’s another condition or medication that causes it.
There is still nothing obviously wrong with my tongue, but the pain gets so intense that I sometimes find it hard to sleep at night. Water tastes like soap. The first time I notice this, I think my dishwasher hasn’t rinsed the dishes properly. But I change glasses and still taste soap. I try bottled water, to no avail.
The taste varies. Some water sources taste more metallic than others, but always, in the end, there is at least a faint taste of soap. I explain all of this to my doctor, and while he admits that he’s not very familiar with the condition, it sounds plausible. He agrees that after this long, plus treatment, it’s not thrush.
After about six weeks, the pain finally goes away, and I foolishly think that whatever it was, it’s over. A few weeks later, though, I wake up to discover it is back … with a vengeance.
Eventually, I will stop having these periods of “remission.” The condition becomes relentless. It still behaves cyclically. It starts off with intense, burning pain. Eventually, one side of my tongue (always the same spot, always on the right) will begin to hurt intensely, as if I’d badly bitten it recently. Then, at the end of a cycle, my tongue feels super smooth, as if I have no more taste buds on it. This is when the pain will be the lowest, but it’s still not entirely gone.
After 18 months of misery, my dentist will formally diagnose the condition. It’s not uncommon for a diagnosis to come from a dentist. They see more BMS patients than most doctors do.
One day, I’m eating a sandwich and realize it tastes like … fish.
It’s nice to have a formal diagnosis, but I soon realize it doesn’t much matter. There’s no cure. There isn’t really even a treatment. I’m advised to avoid acidic and spicy foods (the very foods that will tend to taste the best as this progresses).
Orajel is sometimes the only thing that offers enough relief ― albeit temporary ― to let me fall asleep or talk or eat. I try all sorts of mouthwashes, but the most they offer is a numbing effect similar to Orajel, and ironically many of them burn too much to be worth it.
Brushing my teeth becomes a major challenge. Toothpaste burns, but even a wet toothbrush with nothing on it intensifies the pain. I begin to dread returning to the dentist after I’m fully vaccinated against COVID-19 because I know that things in my mouth will not be good.
Eating becomes a nightmare. I never know what something will taste like from day to day. Sometimes even within the course of a single day. One day, I’m eating a sandwich and realize it tastes like … fish. It’s ham and cheddar with mayo, so this is rather disconcerting. It takes some experimenting to realize that the ham and mayo combo is causing this fishy flavor. Either food alone or with other foods tastes fine. Eventually, this will pass and the combo will taste normal again. But I know by now that it might go back to tasting fishy (or terrible in some other way) at any time.
I know that any food or drink, at any given moment, might taste completely fucked up. Sometimes food has virtually no flavor at all. The first time this happens after the start of the pandemic, I’m just grateful to have experienced it before, since loss of taste is a COVID-19 symptom.
Everything involving my mouth becomes painful. Talking, eating, sometimes even drinking. The pain is often really bad in the mornings, since I suffer from serious dry mouth (thanks to my psych meds) and overnight my mouth can get so dry that my throat is sore. While dry mouth and some meds can be a trigger for secondary BMS, it seems unlikely in my case since I’ve had dry mouth for well over a decade.
The most likely explanation is that I have Hashimoto’s disease, an autoimmune condition where your body attacks your thyroid. It did not respond well to the gastric sleeve surgery I had in March 2018, and my thyroid levels have been fucked ever since. Hypothyroidism can be a trigger for BMS.
There will be nights when I have to stay awake until I’m literally unable to because if I just try to sleep, the pain will keep me awake and my anxiety will run wild. On some days I have to force myself to just eat something because the pain combined with the unpredictability of how anything might taste at any given point is overwhelming. I will become utterly exhausted and frustrated by this, and food will feel like too much damn work.
I will find myself ignoring calls from my best friend or my mom because talking is just too painful (and I’m originally from New Jersey. I really like to talk). I will find myself explaining it to them, hoping they can understand given how ridiculous it all sounds, even to me ― the one living with it. I will look online for support, but even sites like The Mighty don’t have resources or communities of fellow sufferers. I begin to feel incredibly isolated and alone in dealing with it.
I will remind myself that I’m used to chronic pain. After all, I’ve had fibromyalgia for almost two decades. I have had endometriosis, which caused so much pain that even narcotics couldn’t touch it. Unfortunately, the reality is that BMS is an entirely different experience. It’s maddening. I soon will find myself fighting the urge to engage in various types of self-harm, just to distract myself from the pain, or just to experience a different pain. Instead, I will pick at my skin ― an obsessive-compulsive disorder behavior I’ve battled since my teens, one that will become worse because of BMS (and the pandemic won’t help).
I wish I could say it’s gone, that I found something to treat it, that it’s ‘better.’ The most I can say is that I’ve adjusted.
I find myself experiencing suicidal ideation for the first time in a very long time. Thankfully, I won’t become actively suicidal, but I will think about it. I don’t want to die, but at the same time, on some truly bad nights, I find myself thinking that death would mean the pain is gone. There are times when that doesn’t seem like such a terrible trade-off. I realize that I lived with fibro pain for probably a decade before I ever felt that way. BMS took me to that dark place in less than six months.
As I write this, it’s been almost 30 months of living with BMS. I wish I could say it’s gone, that I found something to treat it, that it’s “better.” The most I can say is that I’ve adjusted. There are days when the pain is really bad or things taste especially weird or bad, and I just want to cry from the frustration. My thyroid is still screwed up.
I’m hoping my most recent medication adjustment will be “the one,” and that it will finally stabilize for more than five minutes. Maybe, I dare to hope, if that happens the BMS will just go away as quickly as it came on. But other times that hope is too much to allow.
The pandemic has helped with perspective, in terms of suicidal thoughts. It’s made me much more aware that I don’t want to die, that there’s too much I still want to do. So I fight through my darkest moments. I keep going.
Some days are absolute shit, yes. But I know that they won’t all be that way. I know there are beautiful, brilliant, breathtaking days yet to come that I absolutely do not want to miss, and I also know that on those days my ham and cheese sandwich might taste like fish. I just choose to believe that in these magical moments, even that won’t seem as awful.
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